Honored Kid

Toby S.

Age 10
Toby S. Kid Photo

Location

Flemington , NJ, US

Diagnosis

Acute lymphoblastic leukemia (ALL)

Date of Diagnosis

April 2015

Status

In maintenance

Treated At

The Children's Hospital at Saint Peter's University Hospital

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My Story

            
      (update below) another year has gone by  another update below 
At fifteen months old the unthinkable happened. On April 16, 2015, Toby was diagnosed with cancer! Leukemia, the words no parent should ever hear! We spent the next 2 weeks in PICU and the peds floor at St. Peter’s Hospital, where he had 2 blood transfusions, several LP’s (spinal tap chemos) and bone marrow done. The months of May and June 2015 were a whirlwind of Clinic vists with finger pricks to check his blood counts and 5 LP's for 5 weeks in a row. The end of June Toby had a two day stay in the hospital. Every week of July 2015 Toby had many clinic visits, ending the month in the hospital for 8 days getting blood transfusions. In August and September 2015, Toby started a new phase of treatment staying 5 days every other week to get heavy duty Methotrexate chemo followed by the recovery drug leucovrin, plus clinic visits on his off weeks. In October 2015, Toby had many clinic visits plus having a shot of chemo in each leg for 2 weeks in a row. The beginning of November 2015, Toby had a 4 day stay because of his blood counts Then the Sunday before Thanksgiving, we took Toby to hospital where we spent the next 20 days. Toby had about 18 blood transfusions, 2 fresh frozen plasma transfusions and about 7 platelet transfusions. The day after Thanksgiving, Toby was moved to PICU for the next week. We almost lost him, but by the Grace of God he pulled though. We finally left the hospital on December 10. Toby came back to hospital for three days mid month for another transfusion and ended the month getting another LP. NEW YEARS DAY January 1, 2016 through February 4 (except for 3 days in January) Toby was back in the hospital getting many transfusions again. The rest of February was spent going to clinic visits. March came in and went out like a lion with a 2 day stay in hospital getting another transfusion on 1st and 2nd. Mid-March Toby had clinic visits and a LP. The day before Easter, Toby ended up in the ER and he spent the next 19 days on the peds floor. We came home on April 13th and on the 19th Toby had another LP. The month of May 2016, we were finally able to breathe a bit with only having to go to clinic once a week for PT and speech.  June Toby has had one LP and is going for PT and speech therapy. Toby had another LP on July 12. Over the past 14 months Toby was hospitalized 132 days. If you add in all the clinic visits, all the LPs, PT and speech therapy it over 190 days! As you can see we have devoted our lives to his treatment protocols, comforting him and keeping his spirits up. The whole family has come together to support and love this precious little boy! Toby is a beautiful, loving, little guy who is a fighter! Toby has fought more than most adults I know. As if the stress of watching your loved one isn’t enough our budget is stretched to the breaking point! Please pray for Toby to gain strength and continue his fight! Also pray for strength for our family to get through this extremely difficult time in our lives!
Toby has made wonderful progress in his treatment so far. 
Toby has gained weight he's grown a couple inches is a happy three year old boy who is getting ready to be put in preschool hopefully  spring of 2017
           UPDATE ON TOBY 
Toby started July 2016  with Speech and Physical therapy and a dentist appointment on the 5th
 a LP on  the 12th
Neurologist appointment and speech the 26th
August  Toby  had labs speech and PT on the 9th
we were able to take the rest of August off for a much needed rest from all the back and forth. 
September  Toby  had another LP followed by clinic and PTs every Tuesday for the rest of the month 
October  was the same as Sept. with an LP and PTs
November  we started the Month 2 day hospital stay for a fever
Toby had 2 clinic visits on the 7th and 9th     PT  and clinic the 22nd  and another LP on the 29th
December  Toby had Clinic and PT on the 6th and 13th another  2 day hospital stay the following week then had a dermatologist appointment on the 26th and the following day had push chemo ( cheom pushed into his mediport)
January 2017 as last year  saw us at St. Peters Hospital on Tuesdays having PT every Tuesday unless he had chemo (the 31st)
February  7th Toby went to the Denist again for his 6th month check up
PT on the 14th
LP Chemo on the 21st
and ended the month with clinic and PT on the 28th
March  he had PT pn the 7th and 14th with Push chemo on the 21st
.
April 4th Toby had a clinic visit
we took the 11th off from PT  Toby has Push chemo on the 18th and on the 25th he is scheduled for his last am PT 
May 1st Toby is Scheduled to start (M-F)early intervention preschool at Copper Hill School
and will have PT and Speech There   so PT at St. Peters Hospital will go to once a month in the afternoons. 
Toby has come so far from that sick little boy that he was 2 years ago. He still gets tired easily. He will tell me his legs hurt (from chemo) 
 Toby takes nightly chemo that I give him pluse the regime of other meds that he takes on Mondays and Tuesdays once a month he has other medicines he's also takes He also gets monthly chemo at St. Peters 
We are looking forward to this summer and just having a normal summer as possible.
        WOW ANOTHER YEAR
Toby had done great this year NO HOSPITAL STAYS!!!!  Toby continues to get chemotherapy once a month at  St. Peter's  hospital he also goes to pre school 5 days a week. Toby still has bad days for they are few and far between.  He is starting to test bounders which is a good thing. 
Toby is going to Salvation Army kids club on Wednesday nights and he is a Moonbeam
 
We will join Sesame Place again this year Toby had alot of fun last year
Toby put his wish in for make a wish
He wants to meet Maui from the movie Moana at Disney World
 Thank you for letting me share his Story

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